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Research Letters

Adherence to antiretroviral therapy among a conflict-affected population in Northeastern Uganda: a qualitative study

Olupot-Olupot, Petera; Katawera, Andrewb; Cooper, Curtisa,c; Small, Willd; Anema, Arankad; Mills, Edwarda,d

Author Information
doi: 10.1097/QAD.0b013e3283112ba6
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Abstract

Distribution of combination antiretroviral therapy (cART) to HIV-positive individuals in complex emergencies is imperative from a public health and human rights perspective [1]. Patients receiving cART in armed conflicts have demonstrated clinical outcomes similar to those of patient in politically stable settings [2,3]. Numerous qualitative studies have assessed structural, cultural and socioeconomic barriers to cART adherence in resource-limited settings [4]. However, none have examined these within the context of armed conflict. We aimed to examine patient-important barriers to cART adherence in a conflict-affected area of northern Uganda.

Northern Uganda has been in a state of humanitarian emergency for over 20 years, in what has been called Africa's longest standing armed conflicts with the least humanitarian attention. The Teso subregion of northern Uganda has been particularly affected by political insecurity, having experienced violence, child abductions, floods, famine and limited humanitarian response. An estimated 427 000 internally displaced persons (IDPs) reside in over 61 camps.

We conducted focus groups discussion with HIV-positive patients and healthcare workers in Teso, from 1st January to 12 February 2008. We interviewed HIV-positive individuals from eight IDP camps (Abwanget, Aliakamer, Aleles, Alukucok, Ajeluk, Angopet, Ocorimongin and Ongongoja) and healthcare workers from the Katakwi Health Centre. Criteria for eligibility in our study-focus groups included documented HIV infection, current access of cART, minimum 5 years residence in an IDPs camp, and minimum 18 years of age. Patients were selected by their health providers and did not receive compensation for participation. All study participants signed written informed consent forms in either Ateso or English language.

We developed a semi-structured interview protocol that prompted respondents to discuss a range of factors that influence their adherence to cART, including: illness, political security, food insecurity, disclosure, adverse events, healthcare infrastructure and transportation. We conducted five-focus group discussions with HIV-positive IDP camp residents (n = 40) and semi-structured interviews with healthcare workers (n = 11) at the Katakwi Health Centre.

Each focus group discussion was facilitated by a physician fluent in English, Swahili and Ateso. Focus-group sessions lasted 90 min, and were audiotaped and transcribed in duplicate. Major themes were coded for retrieval and analysis. Our study was approved by the Ethics Review Board of the Mbale Regional Referral Hospital, Uganda.

Of the 40 cART patients interviewed, exactly half were women (n = 20). Participant ages ranged from 30–67 years. All participants had been IDP camp residents for over 10 years, and had been receiving cART for 8–25 months. Among the 11 healthcare workers interviewed, just over half were women (n = 6). Health workers came from a variety of professional backgrounds, including laboratory technician, dispensary worker, senior nursing officers, clinical officer and a health information assistant. Four major themes emerged from the focus-group discussion: transportation, human security, health infrastructure and food insecurity.

Transportation was frequently cited as a patient barrier to cART adherence. Factors prohibiting good adherence included weather, transportation cost and illness stage:

Dates for review are sometimes too close, especially when the ARVs [antiretrovirals] are in short supply or at the initiation stage of the cART. To come back every 2 weeks or every month means many trips to the health unit, which is too expensive to make.

Generally, those that are quite ill at initiation are likely to miss their doses, as they will require a treatment supporter who may not be available all the time.

Having already experienced or witnessed torture, abduction or killings, respondents cited insecurity and fear as causes of cART nonadherence:

Insecurity results in loss of drugs or forgetting to pick them in time from your house. If you hear the alarm, you just take off.

Clients fear meeting Karamojong cattle rustlers on the way, and fail to keep appointments or cannot wait in the line at the clinic beyond a certain time.

The poor security situation results in loss of medical forms, running far away from the clinic and forgetting ARVs in the hurry to escape.

Healthcare infrastructure and, specifically, lack of human resources and drugs were frequently cited as barriers to treatment adherence:

Health workers are either very few or not available, and yet you cannot get a drug refill before being seen by a health worker.

The line is very long and you sometimes wait the whole day before you are seen, even if you arrived at the clinic as early as 5:00 a.m.

Second-line drugs are not available in our health units hence clients on these miss their dose. They have to travel to Soroti or Mbale to purchase these medicines or access.

Focus groups emphasized the role flooding and patient dependence on caregivers for food security may have on nonadherence to cART:

The communities following the floods can only afford one meal a day (evening meal), hence will ignore the morning dose and only take the evening dose.

Those people who are disabled (sick) miss their doses when they fail to get someone to give them food. We cannot share our little food with them all the time even if we know that they need our support.

To our knowledge, this study represents the first reported assessment of patient-important barriers to cART adherence in a conflict setting, and should be of interest to HIV patient groups, clinicians and the international community. Transportation (poor weather, high cost and limited mobility); human security (real and feared); health infrastructure (limited drug stock and human resources) and food insecurity (due to floods and caregiver dependency) were cited as major factors influencing cART nonadherence in the Teso region. Our findings build on a recent study [3] evaluating clinical cART outcomes in northern Uganda and provide a nuanced explanation of reasons for nonadherence in this population. Understanding patient-important barriers to cART adherence is critical to effectively scaling up cART access. The logistical and security concerns highlighted by participants in this study merit attention from public health officials and clinicians to aid HIV-positive populations in northern Uganda. Efforts to ensure uninterrupted care in these populations remain a core challenge. As populations return to their villages, efforts to retain patients using motorcycle-based counsellors and health workers are effective strategies to ensure continued care.

Acknowledgements

P.O.-O., A.K., A.A., C.C. and E.M. conceptualize the study. P.O.-O., A.K. and E.M. performed the data acquisition. P.O.-O., A.A., A.K., C.C., W.S. and E.M. analyzed the data. The manuscript was prepared by P.O.-O., A.A., A.K., C.C., W.S. and E.M. Manuscript approval was performed by P.O.-O., A.A., A.K., C.C., W.S. and E.M.

References

1. World Health Organization (WHO). Antiretroviral drugs in emergencies: neglected but feasible. Consensus Statement 2006.
2. Culbert H, Tu D, O'Brien DP, Ellman T, Mills C, Ford N, et al, Médecins Sans Frontières. HIV treatment in a conflict setting: outcomes and experiences from Bukavu, Democratic Republic of the Congo. PLoS Med 2007; 4:e129.
3. Kiboneka A, Nyatia RJ, Nabiryo C, Olupot-Olupot P, Anema A, Cooper C, Mills E. Pediatric HIV therapy in armed conflict. AIDS 2008; 22:1097–1098.
4. Mills EJ, Nachega JB, Bangsberg DR, Singh S, Rachlis B, Wu P, et al. Adherence to HAART: a systematic review of developed and developing nation patient-reported barriers and facilitators. PLoS Med 2006; 3:e438.
© 2008 Lippincott Williams & Wilkins, Inc.